Neupro Patch

[ViewsAskew]

Since I don't take the pramipexole every day, I've hesitated to take an anti depressant - I feel OK on the days I take methadone. I can't take pramipexole more than 1-2 days in a row, so it's not like I'm on it all the time.

A lot of us seem to have strange reactions to meds. I often have wondered if that isn't part of how we experience the disease. Multiple times Dr B has said something to me that suggests it's just not common to react like this. But, I see many of us do it here.

I honestly don't know if the d-ribose helps or if it's in my head, but it certainly *seems* to take the edge off when I can't take meds yet and I need the symptoms to stop. I took it this morning and then went to sleep - and slept for about 45 minutes. I had to sleep on my stomach with pillows under my hips to stretch my quads, but I got 45 more minutes . I took it again a short while ago and I'm not dancing while I type and I have been since I woke up the first time.

Who knows, though, if that's really what it is!

[Polar Bear]

If it seems like something is helping... then I hope so much it's helping.
If it walks like a duck and sounds like a duck.... it's probably a duck... lol

I googled d-ribose and saw that reviews were positive with regard to fibromyalgia - I would be interested in this.
Others have mentioned that it helps WED. - If it helped even a little with both of these conditions I would feel I had hit the jackpot.

I see that 500g powder with 25% extra free costs £31 which is around 45 dollars.
And it looks like the dosage is 5g i.e. a rounded teaspoon 3 times daily. So it equates to about one month supply if it was taken very regularly i.,e. $45 per month.
One side affect was loose motions. and not much else of note.

If it was helpful it would be worth it and I guess the only way to find out is to try it.

[ViewsAskew]

The d-ribose is definitely not inexpensive! But, as you said, if it works, it's worth it. I did see a lot of positive reviews for fibro, so definitely worth one bottle to try. And if it helps with the WED, too, a definite bonus.

[Polar Bear]

I'll order it now before I think too much about the cost and talk myself out of it.
And will eventually report my findings

[rthom]

One f the things I hate most about WED is the helplessness that you are left feeling when friends are having it hard and there is just no thing to say that would be even remotely helpful. Ann I hope that you know everyone is here, trying to think of something useful to add in order to help.

[debbluebird]

Ann, so sorry that it has not worked for you. I know how disappointed you must be.

[ViewsAskew]

You know, I only had a few hours of disappointment. Mostly, I've moved on to being thankful that I've stopped it and that in a few days this nightmare will end. My symptoms have been out of control for about 24 hours now, even with a massive amount of methadone.

While methadone doesn't allow me to have my full life back (and I fight that over and over), all in all I'm pretty darn lucky. Methadone continues to work for me and if I use pramipexole once every so often to reduce the methadone usage, I'll be happy.

[ViewsAskew]

It's now about 90 minutes of sleep in 45 hours. The sensations have been lessening over time, but still are more than my full dose of methadone can handle. I've used the d-ribose 4 or 5 times today and it really seemed to have helped throughout. I only had two shortish periods when I had the really strong, forceful sensations and seemingly uncontrollable movements - when I gets bad, it's as if my body moves involuntarily when the sensations come.

It's not in my arms anymore, so that is good.

I wrote a LOOOONG (much too long) letter to Dr B explaining what happened - and likely included too much detail. He responded to the very first thing I said - not the rest. He's also on vacation so I'm lucky he responded at all!

I decided to use this one more time. The one thing Dr B said was that you should replace the patch in the AM. I told him I'd come to that conclusion, but that I'd not wanted to wait another day, so started it late in the evening. I don't think that is the issue, but to prove that it's not, I said I'd use it again, but only after everything is completely back to *normal*. I want to make sure that it's not something else causing this.

Oh, he did say one other thing - that I might have to take a partial dose of methadone with it. But, to me, that is pointless. Yes, reducing the opioids an OK endeavor, but what I really want is to take NO opioids for day to 5 days, and no DAs when I take the opioids. Even 5 mg of methadone causes side effect issues. Not as bad, but I'll still sleep 10 or more hours, for example.

But, if that's the case, I might as will stick with pramipexole as it's less expensive. I've already been using it to reduce the methadone - taking it about 3 times a week, but in a half dose so I'm still using opioids daily. A half dose of pramipexole seems not to cause the depression issues. And if I want to take a full dose, it does stop my symptoms completely.

[rthom]

What were your methadone side effects again?--I can't remember Also, it must be a great relief to have Dr. B to ask questions of between appointments

[EeFall]

ViewsAskew,

When I tried the Neupro Patch I continued using the Lyrica and methadone (per doctors orders), it was really just a replacement for the pramipexole, no way it would have worked throughout the day without the others and it only worked during the night taking 2mg. 1mg I could not sleep and had symptoms and this was with taking methadone and Lyrica. It gave me 8 hours sleep, but at the cost of changing my personality (made me ticked off about everything ) and my wife demanded that I stop taking it . So 2mg actually worked with my other drugs - too bad it made me an old coot.

[ViewsAskew]

What were your methadone side effects again?--I can't remember Also, it must be a great relief to have Dr. B to ask questions of between appointments

It resolves my WED about 90% of the time and in that way, I love it. I sleep extremely well when I take it. Too well, though. I find I need 10-14 hours of sleep every day. If I only get 8 hours, after 3 or 4 days, I usually sleep 14-16 hours and can't get up until I get it. I am very tired during the day, and wide awake at night when I should be sleeping. I very rarely see anyone, go anywhere, do anything...I don't have enough hours in the day. And with my schedule so backwards, it makes it very hard to earn a living.

In terms of WED, it's the best. In terms of working or a personal life, it truly is problematic.

I think even if I wasn't a patient of Dr B, I'd count on him to help...he just seems to do that for anyone.

[Polar Bear]

I think Ann's experience with the patch has in no way been a waste of time.
It has been an experience (albeit not a good one) but it has also shown whether the patch would or would not have worked.
That in itself is good information to have.

A good idea to get everything back to 'normal' before trying the patch another time.
If symptoms kick off badly again....... well, the cause is then clear.

Good luck Ann, I wish to peace and sleep.

[ViewsAskew]

ViewsAskew,

When I tried the Neupro Patch I continued using the Lyrica and methadone (per doctors orders), it was really just a replacement for the pramipexole, no way it would have worked throughout the day without the others and it only worked during the night taking 2mg. 1mg I could not sleep and had symptoms and this was with taking methadone and Lyrica. It gave me 8 hours sleep, but at the cost of changing my personality (made me ticked off about everything ) and my wife demanded that I stop taking it . So 2mg actually worked with my other drugs - too bad it made me an old coot.

That's one of the reasons I decided to try it - often these drugs to change our chemistry is negative ways that impact how we act, how we feel. I knew pramipexole wasn't something good for me and was hoping this was going to be OK. I dn't know how or if carbidopa/levadopa would have affected me emotionally since I augmented in one use. Same for Ropinerole - augmentation in one use.

I hope others who've augmented try this. We need to know if it really will work for many of us in terms of augmentation. We can never know until we try how it will affect us in other ways. I was hoping I'd have fewer, different, or lessened side effects compared to pramipexole. I suppose that was true. It doesn't make me depressed/angry at all, I have fewer ADHD-type side effects, and the awakening issue is about the same. So, it's better in that way. I think I still augmented, though, and that's a definite problem!

[ViewsAskew]

It's now 2 PM here. I've slept another 3 to 4 hours in 30 - 50 minutes increments since 5 AM. I sleep for a bit, have nasty symptoms, awaken, wander around, eat, try to wake up to stop the violent symptoms, they stop, I go back and try again.

This is regular augmentation unless there is some other weird thing that's never happened to me before. Mild compared to what I've been through before as I can get some sleep and it's only about 43 hours since removed the last patch. As I sit here typing, my legs are in constant motion, but I have no symptoms in my arms and I do not have PLMW - those are the two things that separate regular augmentation from severe augmentation for me.

To think that this occurred after taking the drug for 6 days is very surprising. That's the same amount I'd expect to augment from pramipexole. Though it could be that I'd augment in 3 or 4 these days - I haven't taken it longer then 2 days in about 8 years. I know I, like some of you, am a super-augmenter. I also know that very few of us do that - it's probably a fraction of a percent. But, It really does look like it can augment fast, too, even if the overall rate of augmentation is only 10 percent. (not sure if 10% is proven over over what time frame - this could very well rise over time as it's not been around as long as the other DAs to know).

Not sure if I'm going to try for another 30 minutes or so or if I will just stay up.

[badnights]

I understand that you want to cover all bases in this Neurontin trial, but I think I would be nervous about trying it a second time, once everything's back to normal. What if every time we augment, we become less tolerant of DAs and more likely to augment? Then your only remaining option for relief from the methadone side effects, of using pramipexole for 2 days every 7, might be lost.

It must mean something that you augmented so quickly on all the dopamine drugs. If only we knew what the difference was that's causing you to augment so fast... it might help explain augmentation in general.

Thanks for making a record of your experiences here; I wish some RLS/WED specialists would read this board. They would have to wade through a lot of irrelevant stuff, but I bet it would be educational.